Desferal for 24hour none stop???

Hello..

my doctor told me to use my desferal for 24hour none stop for the hole weeks. i just want to find out if any of you guys here use desferal for 24hour none stop..

what is the risk?? will i have any complication later??

The risk would be in not listening to your doctor. If your doctor has said that you need 24/7 desferal, do it. It is an aggressive chelation technique that can help to overcome iron overload. It works.

Hi HaIkEr77 ,
i use to take 3 desferal vials in 24hours it's ok to use that much long . but , i dont have experienced 7 days a week  ... now i m on this pla , 6 desferals in 48 hours Non-Stop, once or twice a week , its my own plan  , which meet's to my comfort .
hey , are you using any chelater other than the desferal??,  like Ferriprox/L1/Kelfer or Exjade/Asunra Oral chelators ??...

Take Care
Umair

HaIkEr77,

I was on 24/5 desferal. Be awared that the dose of desferal isn't too high. My doc decided to also increase the amount of desferal. That wasn't a smart plan. I developed an allergic, and I can't take it anymore. Nah, new doc won't try again and see what happen. Even the pharmacist said something about the high doses.
I couldn't stand the idea of 24hours for weeks, so 2 nights per week I could sleep on my favo side ;)

At the moment I am taking Exjade.

Hi,

I am on desferal for 12-18 hours 24/7. I dont have any problem with it. The only thing that i dont like is carriying the pump.

At first, I dont like the idea of using the desferal for long hours but after seeing the result, it was so unbelieveable...I am so happy that i stick with it and sometimes even do the 24hours desferal 

And that too did not have any side effect...Wether i am doing desf for 12 hours or 24 hours, the effect is when you get your feritin result, it goes down tremendously and you will find it is worthwile for the efforts that you have put through.

try it.

thanks u guys..

i try my best to keep my desferal running for 24hour.. but sometimes when i'm working it's hard for me to carry the pump..
and my pump are a bit slow.. 
hhmm.. can i thicken the dose example for each bottle of the desferal i only use 3ml of water instead of 5ml.??

and by the way nice friend in taking L1 too.. my dose are 6 tablet / day.. 

Hi Haiker ,

can i thicken the dose example for each bottle of the desferal i only use 3ml of water instead of 5ml.??

once i asked this to my Dr and she Replied No  she said diluting desferal in less water will make the solutionthick and thick solution will penittrate slowly until that penitrate that will remain like a cyst over the site ... about the time ..  nothing is compareable to the long duration of chelation therapy .. bcoze desferal remain 30 minutes long in the boddy after the stoping chelation after 30 minutes its chelation process  will stop .. soo its best to keep the duration longest ,that is only way to keep chelation process continued for a long time .....  i m on  Ferriprox/L1 9 a day with long chelation with desferal .......

Take care
umair

o.i.c...

thanks nice friend.. i got one more question..

why sometime my urine do not change colour to brown when i'm using my desferal... but most of the time it does..

Hi Haiker ,
well , i m not an expert , experts are here noow ,hope they wil answeer your query ,, i dont why i m in supreme members ( i think just bcoze of my junk posts hahaha ) ..  well i hope that one of Andy,Manal,Sharmin or Zaini will reply to  your question exactly ..... but i  guess that it could bcoze of fast infusion of Desferal , as many people kknow the fact that , desfeal remain's in the body and chelates for 30 minutes after chelation ... soo it could b a reason that your r taking it too fast and that is not doing a fine job bcoze of it... it will b good to infuse it slowly so everydrop work for its full time ... i think, i didn't answer exactly ...

Take care
Umair

HaIkEr77, are you taking vitamin C with your desferal? it does free up more iron to be chelated if you take it with desferal.

HaIkEr77,

Desferal can have side effects, but they are minor compared to the side effects of iron overload.  A very small percentage of people can suffer some toxicity of desferal, most of the symptoms are reversible.  Iron overload however, is very serious and it can damage your organs and in effect can be fatal.  You need to balance the large risks of iron overload with the smaller risks of desferal toxicity. 

I also think that you should take vitamin C, 1/2 hour after beginning desferal it should increase the amount of iron bound and excreted (because it cause the liver to release iron which desferal mops up from the plasma).  How well you insert your desferal needle can affect how well and how quickly the desferal is absorbed.  If you get it beneath the layers of skin at a 45 degree angle it works very well.  If you get the needle between meshed layers of skin then the desferal can pool under the skin.  This can either occlude the pump or delay the absorption of desferal.  Other factors such as hydration and diet can also affect the color or your urine some days. 

We find that when our son takes vitamin C his urine will be darker the next morning.  Since he began taking Exjade, his urine is red several hours after taking the desferal off. 

Best of luck with your chelation - and definitely keep up the 24hr chelation - nothing removes iron like around the clock desferal!

Sharmin

Sometimes my urine doesnt change colour too. From what i've told it could be that you are putting desferal while you have a cold or  flu. It is adviseable to stop using them if you do and start the desferal back when your are feeling better.

I'm not too sure about this one. Can anyone explain more? and the dosage for vit C is 1 tab for every bottle of desf? is that right?

Hello everyone,
I always ask myself.. If we were to go on desferal 24 hours a day is that mean we do not have to get a new site? Is this possible??
Can i have a brief picture of what is going one when we doing desferal 24 hours?

New to desferal

Hi Kinny ,
i think that , you dont have to change the needle or site for 24 hours ,  while you are on 24/7 treament plan . i mean to say , you may have a full day of chelation with one needle and one site ..
i used to have 3 vial in 24 hours with one needle (sometimes, a little more than 24 hours ) , one poke ...  i dont know exactly abt it . alll that i said is on my personal expereince , how i use to have chelatioon  ... if you are using Thalaset , you may read the instructions abt the usage of needle , there on needle's packing you ccan find the instruction abt how long you can take that needle in your skin and at-least how much time you should have to change the needle ... abt Baxter's  needles that andy sent to me , i red on that ,
SINGLE USE ONLY , DO NOT RE-STERILIZE. REPLACE AT LEAST 48 HOURS ...
you can also check the needle's packaging , that you are using , to know these details .....

finaly my opinion is , one needle , one site , one poke , and a complete session of 24 hours of desferal . after 24 hours you may change the needle ... but its only an opinion ..

Also wait for other member to answer this question ....

Best Regards
Take Care
Umair

hhhmm....

wow.. so much information.. thank a lot you guys...

To andy, . .   yes.. i do take my vitm. c when im using my desferal..

To Nur.. i think u have a point there.. bcoz at that time i have a bit flu..

To Sharmin, . .  i'm not very good with needle.. Maybe that one of the reason too.. and thank for u wish..